PRIVATE AND CONFIDENTIAL

PRIVATE AND CONFIDENTIAL is how you get letters addressed to you from an NHS healthcare provider. The NHS provided me with healthcare in 2011 when I blogged my breast cancer in I like it in the glory hole. I had cutting (an operation), burning (radiotherapy) and just in case therapy (adjuvant aromatase inhibitor - drugs to stop oestrogen, just in case any oestrogen-positive cancer cells remain). About a year ago, I made "a uni-lateral decision" (quotes because that is what my NHS GP wrote to the consultant) to come off the aromatase inhibitors, becoming one of the 36% who stop taking the drug by four years. Last week, five years after the BC, I had a write-you-off (discharge) letter,

"Thank you for attending for your recent mammogram. I am pleased to inform you that your mamograms (breast x-rays) show no sign of breast cancer."

So that's it then.  No more annual mammograms. Well that might be it.  I do have calcifications and apparently calcifications can lead to BC.  We'll see. In the meantime, I shall continue confidently trusting a private GP.

Oncologist out

Imagine feeling cared for, nursed, being someone special.  When you're waiting in a busy waiting room, in the oncology department of a big hospital, with no one to talk to, a nurse comes up to you, addresses you by name (almost right) and asks very nicely if she may weigh you.  Someone's paying you attention, aren't they?  They care whether you've put on weight or lost it and the nurse will pass the information to the doctor who knows that some anti-breast cancer drugs tend to make you put on weight, and the doctor will discuss that with you. 

But no, "that's just something the nurses do", explained the oncologist (B) I saw that time, saw just the once, never again.  The next time I came to the oncology department, I courteously though somewhat nervously refused to allow the nurse to weigh me.  She told the doctor - at least now I know that they communicate - and the doctor (C) talked about placebo treatment - visiting the doctor makes people feel better.  Yes, I understand that, having once visited my doctor anticipating our second baby, but wanting a home birth - he said he couldn't treat me because he didn't do home births, and I went home rather melancholy.  Being treated makes you feel good.

Nevertheless, last week when I went to the oncologist, I allowed the nurse to weigh me.  It amused me to note her complete lack of observation as I stood on the scales fully dressed and holding  two bags, one with a purse, a digital recorder, a camera, and a paper back book inside.  Needless to say, I weighed more than before. 

However, for the first time, I saw the same oncologist again.  This man (C) copes with me citing breast cancer research on predict, vitamin D, hyaluronic acid, aromatase inhibitors and that women diagnosed when over 60, gain less benefit from these drugs.  We had a discussion on the relative statistics of taking an aromatase inhibitor versus exercise (pdf), and he tells me not to stop taking the drug but that as far as the oncologists are concerned, I'm cured.  They removed the physical lump; they radiated the area in case they dropped anything; the aromatase inhibitor will prevent anything else starting up.  Keep up the annual mammograms, keep taking the aromatase inhibitor for five years (I can have a trial month out to see if the aches go away and if they do then they'll use a different aromatase inhibitor) but otherwise go away and don't come back. 

I'm cured.

Breast cancer women 'stop drugs'

** Breast cancer women 'stop drugs' **

"About a third of breast cancer patients stop taking medication because side-effects are more severe than they expect, researchers suggest"

says the BBC here.

I'm not surprised. Last time I saw a specialist doctor, he listened only to the first side effect that I mentioned, then he launched off into a spiel about the side-effects only being in the first three months, while I went through another side effect that minute. I watched him and thought perhaps after three months you just get so used to the side effects that you think them normal. But after reading this BBC article, I realise that you just don't bother telling the doctors because they aren't going to listen anyhow. If the doctors aren't going to listen, then you have to do your own thing to deal with the side-effects, and if that means stopping taking the drugs, then so be it.

I had an interesting email from Cancer Research UK about the causes of cancer that you can control, with a wonderful graphic that I recommend downloading and printing. In breast cancer, the fifth most important cause is inactivity, not something you might have accused me of. However, since I last saw that doctor, a new side effect has attacked me - creaky achy joints. I need supple joints so I can kick at tae kwon do, so a side effect that prevents me being active in order to prevent cancer is a very unhelpful side effect, to the point of being contradictory, and therefore the cause of the side effect should be avoided. The cause is the drugs so stop taking the drugs.